Category Archives: Viewpoint

If things stayed the same, I remind myself that I would soon become bored. At some point, I would become complacent, dissatisfied, and restless. I’ve had to learn this about myself, accept it. And from others, I’ve had to learn that it’s OK, that my dissatisfaction can be a positive. It ignites me to keep moving, to keep trying to improve. Determined.

You are hopefully aware of the goals and vision I have for this blog and website. They are posted on my “About” page and you can get a sense of it as you explore. Sofia – Wisdom of the Ages is my aspiration, some have termed it my passion project, to gather and record the life histories of adults. Furthermore, it is a mission of mine to fulfill a vision to use these histories to share the knowledge and wisdom that people amass over their lifetime. I have been dissatisfied with the tendency of our society to ignore the value of what a person learns over a life. Each person has a legacy of wisdom and lessons learned to share for the greater good of our society. This sharing of knowledge through collected life stories can help people improve how they see and understand things going on around them. It can assist in them deciding that they are OK or help them feel better about making a change in how they view/approach life. It may be the safety of knowing that others have thought this or faced this situation before me. It lets us know that we are not alone.

My dissatisfaction in how we ignore and waste the life knowledge of our older adults moved me to start this project and in the face of failure, to keep forging on. I am grateful to have an opportunity to be a caretaker, of sorts, for this information and make it available for others to benefit from, to improve their situation. It’s a huge undertaking. In the end, I may not even make a dent in recording all of the life histories and wisdom out there to be collected and shared. What keeps me going is my belief that no one’s life should be considered insignificant; that it is somehow devoid of any information others can benefit from reading or hearing. What keeps me trying when facing obstacles such as time, money, and distance is the drive to share the stories of the people I meet and interview. Determination. Even with similarities in lessons learned or types of wisdom experienced, each person is an individual. Each individual has had their own experience on this planet that no one else will have. It is the similarities with the differences in point of view that still make each person unique. How awesome is this. We can be similar yet so different. A paradox in life.

It is my pure hope that you find enjoyment when exploring the stories and videos I share here and on my YouTube video channel. Stay with me as I continue to grow and improve in my ability to share all of this great knowledge people have gifted to me. There may be times when I have to slow my efforts. Bear with me. It is the support for my vision that I have received these past few months that keeps me looking for ways to continue. You help keep me determined. And although I dislike having to request, I ask that you consider donating to my efforts. I would like to increase my efforts to cover traveling to interview and record people that are not local or don’t have access to Skype. There are so many people and their lives that I want to reach out to but my budget can’t allow meeting with them. Thanks for your support now and in the future. Thank you for donating, should you choose. It will help more than you know.

Let me know if you have some one in mind who’s life story you believe I need to record. I’d appreciate being able to share it.

Donations of support can be made at my Go Fund Me page. Thank you in advance.

As another week dawns, people all over set out to “get things done” whether that be for work, family or personal/individual reasons. Some people love their formalized ‘To Do’ lists and gleefuly check off activies; a building sense of accomplishment as more items become labeled as DONE. Then there are those individuals that loathe and fear their ‘To Do’ lists because it may overwhelm them and in this space of being overwhelmed, the list runs them-not vice versa. There’s nothing as defeating as seeing few or zero items get checked off your list. At times like these, I’ve abandoned the list and attempts at organization and resort to the ‘putting out fires’ approach to life. Of course it’s not a better method with stress, lack of control and the sense of being imbalanced seeping their way into my world. At least I know I become harried and exhausted as I jump to attend to fire items vs. when I at least attempt to make a list and tackle it.

Since about late October, I’ve been feeling inefficient and ineffective getting things accomplished in my life because I’ve been in “Firefighting” mode. I’ve decided I need to return to formalizing items/ actions that need to get done for the week ahead. I was about to resort to the tired old checklist with items prioritized by importance. However, I’ve been reading the classic self-improvement/management book, “The 7 Effective Habits of Highly Effective People”, by Stephen Covey. Covey’s approach to completing your list of things that need to be done for the week looks at a person’s roles in life and several actions/items that are important for the week in each of these roles. Once you place these items on the calendar with the already known appointments, you may see you actually have more time or at least more wiggle room. This should help a person feel less harried, stressed and attempts to achieve that feeling of balance we’d all like to have.

I decided Sunday morning to sit down and plan my schedule the Covey way. It isn’t a quick activity. You have to figure out what roles you have that week. For instance, my roles this week include: Individual, Personal Development, Job Seeker, Daughter, Student, etc. I then had to think about 2-3 items in each role that I would like to get accomplished this week. Some of these items included appointments I already had on the calendar. From this point on, I had to strategize and figure out the best combinations and most efficient ways to schedule these items onto my week’s schedule. I say best combinations because my tendency is to front load my schedule or should I say, over load it. With the span of available time for my week in front of me, I have placed many of my items to be a balance of a heavy or time consuming activity then an easier (to me) item. I have also left buffer time periods, because as we all know, something will inevitably show up unexpected.

I have to say that yesterday worked out very well. It was a nice mix of several of my roles, including daughter. That meant no longer putting off getting the few Christmas decorations hung or placed. Amazing how something so simple was causing me anxiety. The old way of the ‘To Do’ approach saw it as not being a priority vs. job hunting or student. However, it was important to my mother who can no longer do a lot of the lifting and then hanging wreaths. As a result, I was feeling anxious because I was being neglectful of my mother’s simple need. However, trying the Covey way, it was part of my Daughter role action/items. As a result, the wreaths are up and other items in the house are now up. Took less than the hour I set aside for it too! Overall, yesterday’s Day 1 resulted in my feeling calm and positive through out the day and night. That accomplished feeling had occured. It has been enough to keep me on ‘Covey Plan’ today.

As I was pre-planning this post, I found this quote by Winston Churchill that seems to sum up how I feel trying to move from putting out fires and checklist planning to a more life roles/Covey way of planning.

Let our advance worrying become advance thinking and planning.

Finally, I stumbled upon this image. Have to love that even Godzilla has embraced advance planning! Hope it makes you laugh like it did me. May you get accomplished all you hope to this week and feel that great sense of living a balanced life.

Several years ago, Mary Chapin Carpenter put out her version of a song titled, “The Bug”. It seems there is also a Dire Straits version. Some of the words in the lyrics differ when compared, yet the chorus is the same. “Sometimes you’re the windshield. Sometimes you’re the bug.” I have loved this lyric and Mary’s version of the song for several years. I find it aptly suits the way life can be. Sometimes life and everything in it can be going great but then, BAM! You’re the bug once buzzing along on its merry way only to make final contact with a windshield that came out of nowhere. It can surely ruin your day. Lately, I’ve been seeing a lot of bug days.

So what got me singing this song over and over in my head today. Well, I had a half-marathon event this weekend. I knew I hadn’t appropriately trained for it but I was going to go do it anyway. It’s all about the bling and this is a five year race medal series. I knew I was going to be the bug. And boy was I ever the bug, by mile 4, and I still had 9.1 miles to go. It was truly horrible and scary at some points as I kept trudging along, not willing to give in or up, even as I lost feeling at times from the waist down (except for the ever growing foot blisters, they were pounding). Thankfully a group of women started chatting with me and I mentioned I was scared I wasn’t physically going to make it. They made it their mission to “get me across that finish”! Some of them were not feeling the greatest but could have still left me as we got closer. They didn’t. They stayed pinned up on that “windshield” with me as we drove the train into the station, one agonizing mile after another. They all hugged me as we got our medals. I thanked them and then I released them. “Please, go have your fun now that you’ve gotten me back.” I would have been welcomed to stay further with them but I didn’t want to out stay my welcome. To be truthful, I also wanted to be alone to lick my wounds a little too.

Flash forward to this morning. I’m still in pain but not as badly as yesterday. This song starts going off in my head. Yes, I truly am the bug right now. Little secret. On the drive home, I received an email saying I wasn’t going to be further considered for a job position…in retail. My job hunting is going so well that even a retailer won’t hire me and during the holiday season. Now that’s being a bug to the windshield. Although I wanted to stay buried in my bed covers, I got up knowing it may be a painful day in many ways. Here’s the thing. The first several steps were painful, but as I kept moving it got a little easier. Instead of canceling on a networking event, I decided to go. I was going to be counterintuitive.

By definition, counterintuitive is doing the opposite of what intuition would lead you to expect or do. Most people would tell me to maybe have stayed in bed and off my feet. Heck, my own head was telling me this. But there’s a recovery secret I was once told by a very athletic friend. He always swore you should get up and at least go for a walk after physically beating yourself up at a race. Gets the lactic acid moving and tells your body it’s going to have to move on. Dang it! He’s pretty correct on this. When I follow this suggestion, my pain levels go down quicker and alleviate sooner. So even though I was in no physical mood to move, I got up and about to go to this event. And then I also realized, although I was in no mental mood to go network about finding employment, I did -though some would not fault me for wanting to just take a break. Again, my head sure didn’t want me to go. Having a pity party would be justified. Yet just as physically trying to move around made my body feel better so did expending the effort to go participate in the meeting make my mind and heart feel better.

Believe me. I’m still going to be hurting from time to time in the future but my day to be the windshield will return. If I can make my way to stay the course to the finish line like I did yesterday’s race, then I can stay the course on other things going on in my life. And maybe along the way, others will come in for a time to help me and shoulder the burden a little so it’s not always so hard or so lonely.

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An early wishing for a Happy Thanksgiving for those of you in the United States. As the week starts to ramp up for planning for the big day, family starting to arrive or you being the one to travel, I’ve decide to share a quote from Project Happiness.

‘You will see in the world what you carry in your heart. ‘

During this week when we spend a day in thanks and gratitude, may the state of being grateful take root in our hearts and radiate out to those around us.

Almost two weeks ago, I had the opportunity to attend the Quality of Life Forum – Tampa Bay. It was organized by the American Cancer Society’s Cancer Action Network (ACS-CAN) and took place at Moffitt Cancer Center in Tampa, Florida. The 3 hour session was to showcase nine speakers, including Congresswoman Kathy Castor (Democrat), US House Representative, Florida Congressional District 14. A range of topics from early integration of palliative care plans, fertility preservation, and quality of life for adolescents with chronic illness to misconceptions about hospice were to be discussed. Since that day, it has been one presenter’s story of a man’s journey with cancer and the importance of receiving ongoing palliative care that has stayed with me.
For many the mention of death and the process of dying are uncomfortable to hear. The thought that people would volunteer to spend their morning discussing the difference between palliative care and hospice care, never mind when the two should be provided or overlap is not very tantalizing. However, for many of us working in healthcare, these are very important topics that need to be discussed and discussed openly and honestly. As the saying goes, there is only one thing guaranteed after being born – dying. Some used to include paying taxes but we’ve all seen some avoid this. Death doesn’t allow loopholes. We will all at some point die. There I said it.
Many of us, when we admit to thinking about our deaths, hope that it will not be too difficult and that we will die at home and in peace. Some do die peacefully in their sleep unaware that their last day had come. However, for many, this will not be the case. For many of us, we will also be faced with a major or chronic illness that may start us on the path towards our death. This path will be different for every single person that embarks on it. That is a key point. Just as we our individuals in life, we are individuals in how an illness will behave in us and how we will die from it. Healthcare in the United States is just starting to aggressively attempt to implement individualized/person-centered care. Just as we want our curative (aggressive) medical care to be individualized and person-centered, so should our care be for those fighting a serious illness that may lead to or is about to result in their death.
Not all serious illnesses will lead one to being on a direct path to their death. Cancer and Alzheimer’s disease are two diagnoses that come to mind. Both diagnoses denote very serious illnesses. However, depending on a multitude of factors, the length of the illness before death becomes a viable outcome will vary. People with Alzheimer’s can live many years after diagnosis. People with cancer can elect to have surgeries, undergo treatments, etc. that may prolong their lives for years. They may not even die of the cancer originally diagnosed. Yet what will be their quality of life?

Keep in mind that treatment is difficult on many levels for the one receiving them and those caring for them. In addition, both those with Alzheimer’s and those with cancer will have to navigate the medical-healthcare system while they are receiving care. Navigating medical care is a very scary prospect even for those who are healthy. Imagine how it can be for the person and their family when a serious illness is involved. This is where palliative care can and should be provided.
Palliative care (as defined by the National Hospice and Palliative Care Organization on their website: http://www.nhpco.org/palliative-care-0) is “patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and to facilitate patient autonomy, access to information and choice… Services are available concurrently with or independent of curative or life-prolonging care.” Some key points here are that services are provided concurrently to curative or life-prolonging care and to optimize quality of life by decreasing suffering. Nowhere does it say that care will be stopped or lessened in some sense. This is a misnomer in our society’s understanding of palliative care. Palliative care provides the space for the curative to aggressive medical interventions to continue while attending to the other needs; the psychosocial, that individuals require to decrease suffering. The two don’t have to work in opposition or wait until “everything has been done”. They can complement each other. Providing palliative care in conjunction with curative care has been reported to improve quality of life, increase life span and reduce cost of care because the treatments provided more closely match the patient’s goals and needs. (National Cancer Institute; Center to Advance Palliative Care; American Cancer Society Cancer Action Network)

Below is a well-known image Diane Meier, MD first used to compare Old and New Palliative Care Models.

The old (and still most followed) palliative care model is seen on the top. This old model focuses on providing curative/ aggressive medical interventions until it is determined by the physician that “nothing further can be done” in attempts to cure the patient. Typically at this time the patient is either told to think about hospice services or maybe is provided some interventions to make them comfortable until their death occurs. Worse yet, the patient’s wishes being unknown or not honored, s/he continues to receive aggressive or non-needed services such as unnecessary medications, hospital admissions for infections, surgeries, etc. All of these actions work together to lower quality of life and quality of death. Furthermore, if hospice care is provided it typically is provided only within days to several weeks of the person dying. Therefore the full support and benefits of hospice are not implemented.

The bottom model is the model focused on in this post and throughout the attended ASC-CAN “Quality of Life” Forum. This demonstrates the concept of providing life-prolonging care in unison with the many facets of palliative care. This model of care is provided until it is agreed that the illness has progressed to a state that hospice care is better suited for the optimum care of the patient. You will notice that the period of hospice care provision is longer in the new palliative care model. This is due to the patient’s wishes and preferences of care being known and followed. If it has been determined that aggressive/curative measures are no longer beneficial or will negatively impact the quality of life for the patient then hospice services can be initiated. The majority of speakers participating in the ACS-CAN Forum kept noting the following point, “ just because a doctor declares that ‘nothing further can be done’ doesn’t mean that nothing can be done regarding the care of that individual as they now prepare to die.” Hospice care isn’t lack of care or lack of quality care. It can mean the provision of even more care/services that is targeted to keeping the patient as comfortable as possible and as well cared for as possible in guidance to their known wishes and preferences.
One of the main areas targeted for care whether palliative or hospice is pain. Pretty much every speaker that day at the ACS-CAN Forum touched upon effective pain management as a means to improve quality of life. But pain comes in many forms.

This table helps explain the concept of “Total Pain Control”. Dame Cicely Saunders, the founder of the modern hospice movement, has written extensively about treating not just the physical pain but the other types of pain a person experiencing a serious illness has to encounter. The physical pain experienced as a result of a tumor impinging on a body part, causing nerve damage, etc. can also be influenced by these other types of pain. These psycho-social areas of pain are also dealt with on their own. Issues such as depression, concerns about finances and questions of faith can all impact the level and types of pain a patient is experiencing; they will all also be very individualized.
Diane Portman, MD from Moffitt Cancer Center presented to the audience at the Forum on how Moffitt is working to provide palliative supportive care to oncology patients. She discussed the focus on attending to these four areas of pain by a multidisciplinary team to improve a patient’s quality of life and experience of care in their organization. She spoke of a young man named Gar and his experience after being diagnosed with cancer. Gar was a former professional musician who had switched careers and gone on to become an experienced pilot. He was also highly active in his Christian faith. Gar and his family requested palliative care services in conjunction with his aggressive medical care. He wanted to fight his diagnosis so that he could be with his family and baby son as long as he was able. His goal was aggressive treatment but still have as active a life as possible. The team continually assessed these areas of pain in conjunction to Gar’s known treatment preferences. His family has reported that the attention to all of his areas of pain, his wishes and knowing what his goals were helped Gar to live a quality existence up until his death. They feel that this worked together so that Gar was able to live to see his son reach his seventh birthday.
Gar’s journey wasn’t year to year battles with his cancer. There were periods of the disease being in remission or not requiring aggressive care. But by electing to have palliative care ongoing with his curative care, Gar was monitored and regularly asked what his needs and goals were. This resulted in his multidisciplinary team providing various services outside of the oncology focus over the years he lived with his illness. His assigned team didn’t leave him once his cancer symptoms abated for a period. No one knew when his disease would worsen or predict when it would progress to the stage of his dying. However, they could discuss what Gar wanted when he felt good and for when/if the disease progressed to meaning death. As a result, Gar and his family enjoyed the time they had to the best of their abilities and with the support of his team. He lived well and he died well.

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I recently took the time to read The Picture of Dorian Gray. I had seen the older black and white movie then the more recent remake showing on HBO. However, I’d never read the book. I was not disappointed in taking the time to read the book. Mr. Wilde’s use of the English language kept me enthralled. The ways he bent it yet let it flow. Musical and beautiful given the at times disturbing plot. I investigated his life online. His views on life satirical, wry, yet truthful. His end sad. Whenever I see one of his quotes or a piece written about him I now stop to read. Today, this was posted by mental_floss on their website. Happy 160th birthday to Oscar Wilde.

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Today marks the 13th anniversary of that day. The day that changed the way we as Americans would view our world. I had hoped the cataclysmic events in my life where I remembered exactly what I was doing at that moment would only include the Space Shuttle Challenger explosion and John Lennon being shot on a New York City sidewalk. Sadly, that wasn’t to be the case.

That day, that DAY. I wasn’t in New York or Pennsylvania or Washington DC. Didn’t matter because in a matter of seconds we ALL transported there. The tears, fear and anger that engulfed me that day revisit me every year on this, that day. Terrorists had made it to our soil. They meant to do us harm, and they did. They meant to make us fear and fall. We did, but…

Those terrorists didn’t keep us in fear. We got up from where we had fallen in such great shock and overwhelming pain. We got up as a country and united that day. We helped each other grieve and rebuild. Not only buildings got rebuilt after that day. We shored up our strength and yes fought back. Sadly, we’re still fighting back. But we we rebuilt something that those cowards thought they would also kill in us, our Spirit. Oh you were so wrong.

Everyday that we as a country have gotten up after that day and participated in what the United States of America stands for defeats them. We are free. We are free to go to school, get educations, have our own thoughts and opinions and to speak and write about them when we desire. As a woman, I can go to school, drive a car, own property and gasp, vote! I am a free human being. Granted we are a flawed country but we know this and we have the freedom to improve ourselves. As a country we are also capable of great kindness and compassion towards others (regardless of whether it’s an election year). We have a great capability to rally support for each other in moments of great need or disaster. But we are so capable of showing kindness and compassion in simple small ways when no one is watching, like holding a door for an older adult or paying it forward somehow. It hasn’t been ripped out of our fiber or humanity.

I’ll close with some lyrics from an old Gospel song that have been going through my mind as I write this:
” I sing…because I’m happy.”
“I sing…because I’m free.”

Today, this day, go show kindness and compassion to another human being then continue to do so everyday. Peace be with you.

Overall, I agree with what Ms. Angelou wrote. Yet this quote stayed with me yesterday into today trying to wrap my thoughts around a part of it I didn’t fully agree. Working with people in the late stages of Alzheimer’s, I have witnessed that these individuals may not remember you tomorrow, never mind in a few hours, but they do remember how you treated them. Be mindful of how you treat those around you, your loved ones, your friends, because the essence of your interactions stays with them.

As I begin my journey to document the stories and histories of others, I notice that former patients’ names that have stayed with me for so long are starting to disappear from my recall. I can’t recall every detail of stories they’ve told me but portions remain. Especially the words shared that led to discoveries within myself. The words ARE still there. Maybe to be paraphrased versus confidently quoted verbatim – but they are still within me. I feel words that affected you strongly in either a positive or negative manner can stay present for a long time. And maybe that’s just it…the words also lead to the feelings brought about within you. They are symbiotic. The words, the actions, the result of a feeling. They are all essential. These are my thoughts and my experience so far. Ms. Angelou had her own which was her truth. If her goal was to have people ponder on her words (interestingly enough) then she succeeded with me. Thank you, mam.